Abstract

Genetic research in autism depends on the willingness of individuals with autism to participate; thus, there is a duty to assess participants’ needs in the research process. We report on families’ motives and expectations related to their participation in autism genetic research. Respondents valued having a genetic result, as it alleviates guilt, promotes awareness, and may be used to tailor interventions and for family planning. The act of participating was distinctly significant, as it provided personal control, a connection to autism experts, networking with families, and hope for the future. The results of this study highlight complex factors involved in families’ decisions to participate in autism genetic research and provide points to consider for this population of research participants.

Keywords

Notes

Acknowledgments

Magan Trottier would like to acknowledge the support and assistance of her colleagues, Laura Winter, Melanie Napier and Nolan D’Souza and members of her Scientific Committee. Stephen W. Scherer holds the GlaxoSmithKline-CIHR Chair in Genome Sciences at the Hospital for Sick Children and University of Toronto. This research was supported by the Trainee Start-Up Fund at the Hospital for Sick Children’s Research Institute.

Miller, F. A., Hayeems, R. Z., & Bytautas, J. P. (2010b). What is a meaningful result? Disclosing the results of genomic research in autism to research participants. European Journal of Human Genetics,18(8), 867–871.PubMedCrossRefGoogle Scholar

Sanders, J., & Morgan, S. (1997). Family stress and adjustment as perceived by parents of children with autism or Down syndrome: Implications for interventions. Child & Family Behavior Therapy,19(4), 15–32.CrossRefGoogle Scholar

Weiss, M. (2002). Hardiness and social support as predictors of stress in mothers of typical children, children with autism, and children with mental retardation. Autism,6(1), 115–130.PubMedCrossRefGoogle Scholar